Saturday, May 31, 2014

Once Again, The Good with the Bad

It seems that I always write my posts in the middle of the night.  I guess that is when things are the most quite at my house.  Been almost a year since the last entry.

We are celebrating 35 years at this house on the 1st, my mother's 70th birthday on the 2nd, my birthday on the 29th, and my son's on July 1 (and several other family members in between).  Also we are excitedly awaiting the birth of a precious baby boy to my cousin..  Little Landon will be loved by many and was deeply loved by his grandfather Randy (my mother's brother).  Little Landon won't know the love of his grandpa though, as he passed away from his battle with cancer on May 4, 2014.

There has been a lot of changes since the last post.  Crohn's is under better control with the Stelara 90.  Since Jan,  I have been able to receive the injection at home. This has cut out some of the appointments at Mayo.  No issues since I had a minor surgery on Dec 21, 2012 with the lesion, so I have been dismissed from the dermatology group - but can go back any time if I need to.

Elijah started kindergarten on Aug 19, 2013 with the Georgia Cyber Academy.  The cyber academy was the best decision for my family and my son.  With us on the road so much with out of town doctor appointments and hotel stays, Elijah would miss too many days of class and would fail.  The cyber academy travels with us and it is just as flexible as traditional home schooling.  It is not Mon-Fri 8 to 3. We work at night and on the weekends, change vacation days to when we have out of town appointments.

He started seeing a sleep specialist in Oct.  There were times he wouldn't sleep but 2 hours in 34 hours.  The doctor put him on Clonidine - that was the worst mistake ever. Only 4 days on that medicine and Elijah is still dealing with nervousness (7 months later).  He was terrified from nightmares and even felt that something was watching him and following him when he was awake.  He went from a happy and cheerful child to one that wouldn't leave the bed for a week. I couldn't even walk 1 foot from him without him going into a tantrum. He slept with the light and TV/music on till March. He started back doing this after another med switch this past month (more on that later).  On Oct 29, Elijah was switched to Remeron.  He slept peacefully since (except when other meds were added).

Christmas was very good for Elijah. We got great deals. He got his first computer - a touch screen laptop for a little over $225.  Only missing a DVD player, so that has been a bit tricky, as his school sent several DVD's.  He also got a WII with Skylanders Giants for $99!  The Giants Starter Pack was $75 regular price and the Wii is usually $159.  Plus he received several book, a RC Race Car, fishing rod and tackle, and a BB Gun.

Elijah and I were in a car wreck on Jan 17.  My car was pretty damaged, but we are hoping to repair it and get it back on the road soon - just still going through all the legalities.  It was a good car, so many memories.  I had just got it back on the road Mother's Day weekend 2013 - so only 7 months.  We were beginning to make new memories in that car, memories of singing and laughing, blasting music with the windows down while drinking Sonic Slushies.  I will talk more about the wreck and the associated issues in the next blog.

On May 23, Elijah graduated Kindergarten with straight A's. I think his lowest grade was Phonics with a 94 average.  His math and science scores were near perfect.  Waiting to receive his official report card and his end of school Evaluation.    Then we start all over again Aug 18 for 1st Grade.




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